“As someone with Asperger’s Syndrome, I find going out incredibly stressful. Even if I’ve done something a thousand times, and know somewhere like the back of my hand, I am always anxious about what might happen, and if I’ll be able to cope with it, and how long before I can return to the safety of my home.
Not that you’d know that I struggle – they don’t call it the ‘hidden disability’ for nothing.”
Gillan was diagnosed with Aspergers Syndrome aged twenty-eight. It took less than 5 seconds to write that sentence. But let’s stop and think about that for a minute.
Twenty-eight years takes a person through most major life stages – from new born, to infancy, early childhood, middle childhood, late childhood, adolescence, to early adulthood. Gillan navigated his way through each pivotal phase, without accurate diagnosis - and therefore without access to support, understanding, empathy, or even the most basic need of human life; friendships. Each undiagnosed phase influenced all the rest of Gillan’s later life.
Before diagnosis came suicidal thoughts, self-harm and general despair.
At seventeen Gillan was diagnosed with clinical depression and prescribed antidepressants. Over the following years Gillan was on and off various antidepressants, bounced from job to job, university to university and had several breakdowns. Gillan was alternately diagnosed with mild mood swings, mild depression, bipolar and borderline personality disorder. After four misdiagnoses, and because his parents happened to read a book about it, Gillan was finally referred to see if he had Asperger’s Syndrome. A successful diagnosis of Asperger’s followed and Gillan’s life took a turn for the better.
Gillan is now a thirty-six year old father of one. He is also humorous, fiercely intelligent, protective and utterly doting on the ladies in his life; his fiancée Lizzie and their eight month old daughter Isabella.
Karen Wilmshurst, Advocacy Services Manager at Autism Wessex comments; “Diagnosis is a critical milestone for people on the spectrum. It helps individuals take control of their lives and can unlock access to essential support and services. Diagnosis is not only important for those who are on the spectrum, it can be just as important for their parents, friends and loved ones, enabling them to better understand their child, friend or partner.
Tragically many thousands of people up and down the UK are waiting far too long for a diagnosis. For children, on average the current wait is now over three and a half years and many adults receive a diagnosis around five years after their concerns first emerge, and often two years after seeking professional help.”
The National Autistic Society is currently running a campaign called Why The Wait Campaign and is asking the Government to adhere to the NICE guidelines that no one will wait longer than three months between referral and being seen.
Karen Wilmshurst, continues; “Locally, waiting time for a diagnosis for a child is less than the national average, but from the time an individual goes to their GP to first assessment it is around nine months to one year. It is common-place for it to take up to two years from the start of the diagnostic period to actual diagnosis. Although this is less than the national average, we still believe the wait is too long.”
As a parent himself, Gillan now carries the mantle for the next generation. He believes we ought to take the same attitude toward nurturing the human life cycle as we do toward saving the environment from global warming and industrial pollutants. By supporting each stage of the human life cycle, we will help to ensure that all of its members are given care and helped to blossom to their fullest degree. That can only happen for so many people with autism, after diagnosis.
Gillan continues; “Diagnosis helped me hugely. I finally had a tangible reason for why I was different – it wasn’t simply that I was weak, weird or not cut out for life - all criticisms that had been levelled at me. It gave me better insight into my strengths and weaknesses, and using it as a framework to examine past catastrophes, I saw why they had happened and what mistakes I’d made, and why. It was liberating, actually – my self-esteem increased dramatically. Now both my Mum and me understand how it is actually possible for me to have two Degrees and a Masters and yet forget to brush my teeth without a prompt!”
Just four months after receiving his diagnosis Gillan started accessing support and attended a Drop-In session run by Autism Wessex. He has been receiving support from the charity ever since and even met his wife-to-be at a drop-in session. The pair have been a couple for over seven years and will be getting married in June this year. Their daughter will be a flower girl to her parents a day before her first birthday.
Gillan concludes; “Too many families and individuals are waiting too long for an autism diagnosis. Simply put, a diagnosis is life changing and essential to getting support and services. I am grateful for the life I lead today and the footprints we are making in the sand now we have started a family. But it also instills a passion in me to ensure the next generation is diagnosed before despair.”